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Are these results 'normal'?

juliaanna1701

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juliaanna1701 Newbie
juliaanna1701
Posted

Hi all

 

I was diagnosed with Dermatitis Herpetiformis back in 2011 when I was in holidays in england - this was confirmed via a biopsy by a dermatologist and also I had coeliac blood tests and gene tests done which were 'strongly indicative of coeliac disease' 

I live in australia and as I was only over in london for a few months could not have an endoscopy done but was advised by medical doctors over there to commence a Gluten free diet asap as I was severely anemic and had extreme fatigue (along with the DH rash which was sooo painful and itchy!) 

I returned to australia after a few months totally gluten free and booked in to have an endoscopy, but could not complete the gluten challenge - I ate gluten containing foods for five days and lost two kilos, had extreme nausea and bloating, fatigue and an outbreak of ulcers in my mouth. My doctor said it was not medically advisable to continue otherwise I would become medically compromised. 

Five years later and I was scheduled for an endoscopy and colonoscopy to check for IBD (crohn's) due to bloody diarrhea and again weight loss and fatigue, along with anaemia (still eating strictly gluten free)

As I was diagnosed in england, the gastro over here wanted to do the 'gold standard' and get biopsies for a 'proper' coeliac diagnosis - but it was like ground hog day and the same thing happened and I was medically advised to stop the gluten challenge as I was almost sick enough to be admitted to hospital (plus the DH rash came back almost immediately) 

Here are my biopsy results - my specialist has said I don't have coeliac based on these results, but as I have been strictly gluten free for five years and had the positive blood work and gene testing, should I just ignore them? My doctor is more than happy to still say I have coeliac disease and she thinks the specialist is an idiot. 

Thoughts? 

 

 

 

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kareng Grand Master
kareng
Posted

But you were diagnosed with DH by biopsy, so you have Celiac and do not need any further testing.

 

Open Original Shared Link

 

A skin biopsy should be done on a non-affected portion of the skin near the rash when there is an outbreak. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive. 

cyclinglady Grand Master
cyclinglady
Posted

I agree with your doctor that your specialist is an idiot.  You have celiac disease.  It just presents primarily in your skin.   Remain gluten free!  There is plenty of documentation to support what Karen posted. 

Open Original Shared Link

Open Original Shared Link

But...my niece was recently diagnosed with Crohn's (I was sure she had celiac disease) via a pill camera.  It was found at the very end of the small intestine away from the reach of the scopes.  Just some thing to think about.  

I hope you feel better soon!  

squirmingitch Veteran
squirmingitch
Posted

Furthermore, you were gluten free for 5 long years & unable to complete the gluten challenge for the endoscopic biopsies so of course it was negative. The specialist is an idiot! 

As Karen linked, you had a positive biopsy for dh & that is definitive. No further testing is needed to confirm a dx of celiac. 

You might wish to teach the specialist though by sending him a copy of what Karen linked as well as this:

Open Original Shared Link

juliaanna1701 Newbie
juliaanna1701
Posted
  • Author

Thanks everyone,

I found the blood test results I had noted down in my travel journal - apparently anything about 5U/ml is considered a positive for the TGA (Total anti-tissue transglutaminase tests) tests that they do in England for coeliac serology. Mine where"

203 U/ml (anything about 5u/ml positive; more than 10x upper level (5) is immediately checked with an EMA test + HLA DQ2/DQ2 test too - both where positive. 

The doctor over there said that they were 100% convinced I had coeliac disease, esp with the positive DH diagnosis so that they would recommend against a small bowel biopsy as it would just be unnessecary given my blood results to confirm the diagnosis. 

I guess my specialist is an idiot. Is a small bowel biopsy still really the gold standard though? He won't take me seriously if I don't have one, but as I have been strictly GLUTEN FREE since 2011 then how much damage would a scope show? I hate surgery as well :(

Thoughts? 

Jmg Mentor
Jmg
Posted

I think you have celiac and your doctor rather than the specialist is right. The combination of the blood test, DH and the positive reaction to the diet would be enough corroboration for many doctors without a further challenge and biopsy. 

On this point:

7 hours ago, juliaanna1701 said:

Is a small bowel biopsy still really the gold standard though? He won't take me seriously if I don't have one, but as I have been strictly GLUTEN FREE since 2011 then how much damage would a scope show? I hate surgery as well :(

The biopsy shouldn't require surgery. It's done as part of the endoscopy. The endoscope cant take small samples as it goes along. So if you're having an endoscopy for checking for Crohns they could take some samples at same time?

Best of luck to you :)
 

squirmingitch Veteran
squirmingitch
Posted

Again:

Open Original Shared Link

Can a skin biopsy for dermatitis herpetiformis (DH) confirm celiac disease or is an endoscopy still needed?

A skin biopsy should be done on a non-affected portion of the skin near the rash when there is an outbreak. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive. July, 2012

 

The intestinal biopsy is NOT the gold standard when dealing with dh!!!! NO intestinal biopsy needed! You would have to eat gluten for at least 2 weeks prior to an endoscopic biopsy or else you'll get a false negative. AND you know what eating gluten means for the dh right? Do you want to go through the rash again???? :o:ph34r: PLUS, those of us with dh tend to have patchier gut damage than "regular" celiacs so it's entirely possible he will miss the "sweet spots". Then he'll feel vindicated in saying you don't have celiac disease even though he doesn't know his head from his @$$. There is no reason for him to doubt your previous & longstanding diagnosis!

I think you should print out copies & send them to this idiot & tell him to get up to speed!

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juliaanna1701 Newbie
juliaanna1701
Posted
  • Author

Thanks everyone - yes I do know endoscopy isn't actual surgery, but anything to do with needles and hospitals sends me into a panic! 

I'm going to find a new specialist - this one has made me doubt myself and my health so much and it seems to be so unwarranted I don't need that in my life. And plus last time he 'tried' to get me to do a gluten challenge I lasted five Days before having to be admitted to hospital with severe dehydration and a 2kg weight loss. No way I could last two weeks even!

Thanks all for being there to back me up appreciate it :) Biopsy isn't always needed for a diagnostic assessment and diagnosis!

squirmingitch Veteran
squirmingitch
Posted
3 hours ago, juliaanna1701 said:

Thanks everyone - yes I do know endoscopy isn't actual surgery, but anything to do with needles and hospitals sends me into a panic! 

I'm going to find a new specialist - this one has made me doubt myself and my health so much and it seems to be so unwarranted I don't need that in my life. And plus last time he 'tried' to get me to do a gluten challenge I lasted five Days before having to be admitted to hospital with severe dehydration and a 2kg weight loss. No way I could last two weeks even!

Thanks all for being there to back me up appreciate it :) Biopsy isn't always needed for a diagnostic assessment and diagnosis!

Good girl! I think it's real smart to find a new specialist.

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